29 July 2009

Our Out-of-Sync Child

I try not to be one of those gushing "Oh, lord, isn't my child the cutest thing you've EVER SEEN?" parents on here, because that gets old fast. But I'm a mama, dammit, and I love my daughter, and I share a lot of cute photos and tell what I think are funny stories here. As this blog serves partly for your entertainment, but also as a record of our lives, I want to share the not-so-shiny times, too. Don't worry: V's still hilarious and brilliant and all that. It's just that she's more than that, too.When V was first born, she pulled away from bright light. I thought at first it was, because, you know, the womb is pretty dark, and the world is not so dark. But it continued. Lamps, windows, being outside: they all caused her to squirm hard and turn away. Then I thought maybe it's because her father is part mole, but he assures me this is not the case.

As she got older, more verbal, she hollered about direct sunshine. It made her uncomfortable, sometimes to the point of screaming and writhing. So I gave her a shoebox to put her head into when we were in the car. She felt better, but I don't know if she can go to kindergarten with a box on her head. We've tried to replace the shoebox with sunglasses (which she abhors), bonnets, and stylish hats. Sometimes it works, and sometimes it doesn't. If she's tired, or we're someplace new, bright light can push her over the edge.Maybe I'm part vampire.

Anyway, then came potty training, which I quietly boasted about here. And here. It went well, and she quickly had it mastered. But the first time she used one of those self-flushing toilets in public, she jumped in the air, threw her hands over her ears, and burst into tears.

Then preschool started. It takes an only child who's been at home with her daddy all her life a little while to adjust, we figured. But she really didn't adjust. I mean, she's smart enough, and talked excitedly about her friends and teachers, and learned new things. But in the classroom, we quickly got the impression she was not anywhere near a star pupil. She struggled with transitions. A lot. She got upset when it was clean up time, and the lights were turned on and off over and over. She loved her new friends, but when she arrived in the morning and 5 or 6 of them would swarm her, she slowly backed away, albeit while smiling. She refused to listen to directions from her teacher, and instead of circle time, V liked to visit with one or two friends. During structured work time, instead of established works, V made up her own sorting games. She sometimes just wandered through the classroom singing the Star Wars theme at the top of lungs. We thought maybe she was just the weird kid. I mean, she's ours, after all. I don't know much about Shaun's family history, but the Johnson gene pool isn't exactly paved with gold. And as for the two of us? Well, Shaun loves Neil Diamond, KISS, professional wrestling, and milk. I love cemeteries, two dollar bills, Johnny Cash, and sideshow freaks. What did we expect to create? Besides, she's the only child we have. We don't know anything but what we've known with her. She defines normal, for us.

Then, in April, we decided to go to the circus. Now, I don't want to get into a debate about the ethics of the circus. I understand that animals are mistreated, and I am in no way pro-animal mistreatment. But that is not the point of this story.

So we were all excited to go to the circus. V had been on her best behavior, because she has an unnatural love of the Fargodome, where the circus was happening. We parked the car and the three of us walked in holding hands, a big pile of happy family. I had to run ahead to buy the tickets, because we don't so much plan ahead. I gave the nice lady $39 (kids 2 and over are full price. Those Shriners know how to get you), and by the time I found my beloveds, it was all over. Even before we entered the event proper, the screaming had commenced. And though we tried everything but the shoebox, she would not be consoled. She wrapped her arms and legs around her Daddy, buried her head in his beard, and begged to leave. We bought her a light saber and some cotton candy, but she wouldn't let go, clinging first to him, then to me. And then the motorcycles came in, and I could feel the terror fill her little body. We went home. As we drove away, Shaun and I agreed that we needed to see if she could get some help, or we could learn to help her. We didn't see any other three year olds sobbing uncontrollably at the circus, and our excited little moppet was worn clear out from fear, and we'd only been there seven minutes.

Through her preschool, we found a center who did an evaluation and is now providing us with weekly therapy. V's diagnosis is, basically, "failure to develop normal physiological responses." It's the kind of diagnosis kids with Asperger's syndrome get, and folks who have what's called Autism Spectrum Disorder. No one is saying she has either of those, exactly (at least not to us), but she exhibits some responses of that ilk. Sometimes severely so. And even though we've known much of this since she was born, it's still hard for me to see it written down. She is our angel straight from heaven. So what if she spins aruond in a tight circle for minutes at a time, or stands on her head several times a day, or plugs her ears and sings the Addam's Family Theme song to block out the sound of her teacher? She's our sweet sweet treasure, dammit.

She's been to therapy three times so far, and we're hopeful they can help our amazing, hilarious, beautiful girl shine through, so she need not be afraid, and need not hide from large parts of the world.

I'll try to keep you updated on this less cutesy part of our lives, if'n you're interested. Hopefully we'll see her doing better in all sorts of ways by the time school starts again in August. And if not, and you see V on the first day of school, be sure to say hello. She'll be the kid with the box on her head, singing KISS or Johnny Cash. Or the Addam's Family Theme.

7 comments:

I am so lucky to have this marvelous being as my niece. She will work through things and learn lots and continue to be the beautiful song bird she was meant to be. Just remember it is nobody's "fault" that she has these quirks and there will be hard times and the battle will be ongoing but there will be many more good times and much more peace because you were able to recognize this was bigger than her and bigger than you and you found someone who knows how to help her. I love my VV no matter what. And I love you, too.

Sounds like you're doing the right thing to help your already wonderful kid adjust to the world the way she needs to. We're not dealing with quite these challenges, but N does get just totally overwhelmed and into melt-down territory sometimes, over seemingly nothing (or at least, nothing he'll tell me about until hours or even days later). He can look for all the world like he's throwing a big ol' tantrum when he's just in the middle of sensory overload and needs a bit of loving support. He's always been that way, and it is definitely getting better over time, but the older he gets, the harder it is for anyone but his parents to "get it". I admire your honesty in writing about the less-than-shiny parts of parenthood. For one thing, it gives the rest of us permission to do the same, and it also allows people to support you. I'd be interested in reading how you think people can support V and your family as you work through these challenges.

I love Jess' comments & my heart is full knowing you took a deep breath & a leap to do what is best for V! As a mom who has walked in those shoes, the first leap is the hardest. She is quite the charmer!

I totally get it. Karen (my daughter) can't go into Walmart for more than 5 minutes without having to leave because of sensory overload and sometimes it doesn't even have to be Walmart. As she has grown to adulthood she has learned coping mechanisms that work for her - lots of times it's a tape of Mozart and a softly lit candle. She was diagnosed with Ausies when she was 11. Knowledge is power - for you and for her as she grows to adulthood knowing what works and what doesn't. Life can be complicated and very noisy. LOVE the pictures btw.

Barb and Rick gave me a head's up on this...I've been wanting to check your blog for some time, but didn't until today.

When I was in the hospital with mom after her last surgery, I had times, of course, when I felt pretty low. Then I passed a young, pretty mom pushing a stroller with a cute 2 year old in it with an IV coming out of her tiny little arm. Then I thought, "No, that would be worse." Anything that makes your kids hurt has the be the hardest.

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